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CBDC NEWS 2014 Brings New FUNdraiser On May 4th Comprehensive Bleeding Disorders A cash bar, silent auction, Virgin Marys, and Center (CBDC) will host the inaugural fund- tickets for designated drivers are available. raising event The Great Bloody Mary Mix Off in downtown Peoria at the Gateway Building. Early Bird tickets are on sale and can be purchased in person, online, or by phone until If you like Bloody Marys and/or the work April 27th - $30/ticket and $150 for a 6-pack we do here at CBDC - this event is for you! of tickets. Tickets sold at the door will cost $5 more and 6-packs will not be available. We have partnered with area bars and restaurants to provide an afternoon of custom cock- Special thanks to our sponsors Bayer Pharmatails, live music, and fun. Attendees will get the ceuticals, Biogen Idec, Novo Nordisk, Baxter opportunity to sample up to 8 different Bloody Pharmaceuticals, Central States Media, AmerMarys before voting on who has the best bloody ican Harvest Vodka, and South Side Bank. in each category (best garnish, spiciest, and best overall). Dr. Wesly Receives Privileges All proceeds from the event benefit CBDCâ€™s Community Outreach Programming.
Inside... From Compbleed.com............................Page 2 CBDC News, continued...........................Page 3 Advocating for You..................................Page 4 CBDC & the Hispanic Community..........Page 4 About Our Pharmacy...............................Page 6 CBDC Calendar & Feature......................Page 7
Springtime Super Smoothie Recipe......Pg 7
Due to overwhelming demand, Dr. Wesly (our amazing multi-lingual Medical Director) has applied for and received consulting privileges with OSF Saint Francis Medical Center. Dr. Wesly will present at OSFâ€™s Grand Rounds on Wed., July 30th.
FROM COMPBLEED.COM From the desk of Dina Witter, RN Currently, if a woman experiences clots during pregnancy, they are usually treated with anti-coagulation medication for at least the length of time that the known increased risk is present, which, up until now has been estimated to be through the 6-week postpartum period, although some providers treat patients past this point.
clotting risk lasts “until at least 12 weeks after delivery”. During pregnancy and the postpartum period, every woman is at an increased risk for developing clotting of the blood which can lead to deep vein thrombosis, heart attack, or stroke. This increase in clotting risk is due to multiple factors that occur during pregnancy including hormone changes, blood vessel and blood flow changes, change in activity levels, and physical stress on vessels related to the weight of the uterus. Also, some women have genetic predisposition to clotting tendencies, so if one or more of these are present, the risk for clotting during pregnancy is increased even more...
In February, The New England Journal of Medicine published findings from a recent study called “Risk of a Thrombotic Event after the 6-Week Postpartum Period”. This study aims to determine if increased clotting risk in fact lasts at least 12 weeks following birth, in order to identify a possible need for extended anti- To read more please visit CBDC online at www. coagulation treatment for some patients. The compbleed.com. You can email Dina at overall conclusion of the study is that elevated firstname.lastname@example.org.
Please RSVP to Stacey @ (309)688-1345 or email email@example.com.
CBDC NEWS (Continued) CBDC’s Annual Scholarship Winners Announced in June
cational presentation and Q&A session with Dr. Wesly, tickets to the NCAA Men’s Basketball game between Bradley University and Illinois State, and the chance to meet the Bradley Cheerleaders.
Comprehensive Bleeding Disorders Center’s annual scholarship is a national scholarship open to all full or part-time students with a bleeding disorder. This year we had over 50 applicants from around the United States. Managed by the Community Foundation of Central Illinois - scholarship award winners will receive notification in June. If you missed the application deadline you can find other scholarship opportunities by visiting compbleed.com/scholarshipopen/. If you have questions about applying for the 2015 scholarship please contact Tom Joseph at firstname.lastname@example.org.
CBDC gets A+ Rating from webleed.org Bleeding & clotting disorders news website www.webleed.org recently did a social media study of the advocacy groups that are listed in their online directory. The study looked at how easily people who were interested in connecting with a bleeding disorders advocacy group could do so online and how up to date organizations were keeping their facebook and twitter pages.
Nearly 100 guests braved the chilly January temperatures to watch the Braves top the Redbirds 64-46.
fuchsia Evening Out a Masterpiece On March 21st, our Fuchsia Support Group met at The Art Garage Studio and Gallery for an evening of spring-inspired, guided canvas painting.
The midwest region, of which CBDC is a part, got an overall rating of “B”. Other regions included the West (B), East (C), South (C), and Hawaii/Alaska (D). Find CBDC on facebook at facebook.com/ compbleed and twitter at @compbleed. For more information on this study head to www.webleed.org/socialstudy.
Family Night a Success At the end of January, CBDC hosted its annual family event at the Peoria Civic Center. Patient families were treated to dinner (sponsored by Bayer Pharmaceuticals), an edu-
Braving Change Educational Dinner On April 24th Fuchsia & Biogen Idec will host “Braving Change” - a discussion about informed decision-making in times when change may impact a woman’s life. (See our Ad on Page 2)
ADVOCATING FOR YOU CBDC Outreach Coordinator, Tom Joseph, recently made the trip to view/tour the Illinois State Capitol Building in Springfield, Illinois, meet with elected officials, and spread awareness to state lawmakers about bleeding/clotting disorders and how they can affect individuals and families. Peoria area residents will recognize contacted lawmakers including Representatives David Leitch, Jehan Gordan, Mike Unes and Senators Darin LaHood, Bill Brady and David Koehler. Representatives Raymond Poe, C.D. Davidsmeyer and Senator Sam McCann from around the Springfield area were also contacted. Tom was able to sit in while the House of Representatives were in session. One highlight of the day was hearing a young man who has hemophilia, Christian Contreras, being mentioned by a House Representative. The young man was given a standing ovation and invited down to the House floor for pictures and to speak with lawmakers. “It is truly amazing how far the bleeding disorders community has come and how much advocacy is being done on their behalf. It is also nice to see so many other people outside of the bleeding disorders community come together and advocate as well,” said Tom upon returning to CBDC’s main office. “Overall, yesterday was an excellent day to show the true colors of the bleeding disorders community, their response to new legislation and their rights as both patients and community members.”
CBDC & THE HISPANIC COMMUNITY CBDC’s Hispanic Liaison, Maria Diaz, met with Mexican cónsul general, Carlos Jimenez Macías in Chicago recently. They spoke about what CBDC does for Illinois’ Hispanics who deal with bleeding or clotting disorders and what he could do to help us provide better access to care. Macías was excited to learn about our endeavors and that CBDC Medical Director, Dr. Wesly is fluent in Spanish.
ABOUT OUR PHARMACY The CBDC Specialty Pharmacy exists to provide factor-related pharmacy services to our patients. Our patients have the ability to fill their prescriptions for factor and associated products in-person, over the phone or online. We offer: • A pharmacy team with decades of experience in the care of patients with bleeding/ clotting disorders • Convenient home or work delivery • Easy 24 hour a day online ordering via www.compbleed.com • Fast shipping – orders are typically received within 1-2 days • Full selection of clotting factor and supplies to treat Hemophilia, von Willebrand Disease, and other bleeding/clotting disorders • Emergency access to pharmacy services and next-day delivery Your factor order helps to fund our work around the state of Illinois and continue our mission of outreach to the bleeding/clotting disorders community. Not currently a patient? That’s ok! Guess what...you have a choice in where you have your prescriptions filled. Simply have your doctor (or a member of your doctor’s staff) call in your prescription at (888) 322-8670. Our pharmacy staff will review the order, verify your insurance information, and then fill the prescription. Clotting Factor Products Available: Advate – Baxter Alprolix - Biogen Idec Alphanate – Grifols Alphanate SD – Grifols AlphaNine – Grifols BeneFIX – Pfizer/Wyeth DDAVP Injection – Aventis Pharma FEIBA – Baxter Helixate FS – CSL Behring Hemofil-M – Baxter Humate P – CSL Behring Kogenate FS – Bayer Mononine – CSL Behring NovoSeven – NovoNordisk Recombinate – Baxter RIXUBIS – Baxter Stimate Nasal Spray – CSL Behring Wilate – Octapharma Xyntha – Wyeth We also stock all the common accessories needed for infusion: Band-Aids, Gauze, Gloves, Tape, Syringes, etc.
Important Dates & Upcoming Events April
24th - fuchsia ”Braving Change” @ Mango Fondue & Lounge
4th - THE GREAT BLOODY MARY MIX OFF 11th - HAPPY MOTHER’S DAY 19-23rd - compbleed.com Von Willebrand Disease Week 26th - CBDC OFFICES & SPECIALTY PHARMACY CLOSED - Memorial Day 31st - Noche de Fiesta @ the Peoria Civic Center
9th - Happy Birthday to Insurance/Reimbursement Specialist, Joy! 11th - Happy Birthday to Community Health Program Manger, Stacey! 15th - HAPPY FATHER’S DAY 18th - Happy Birthday to Pharmacy Tech, Dennis! 21st - Happy Birthday to Outreach Coordinator, Tom! 23-27th - compbleed.com Hemophilia Carrier Week
Ingredients • 1/2 cup water • 1/2 lime, peeled • 1 medium banana • 1 cup fresh spinach • 2 medium apples, quartered & seeded • 1 cup ice • 2 tbs chia seeds Place all ingredients in blender and blend until smooth. Depth of green color may vary. Garnish with a lime wedge and enjoy!